Yesterday I had a conversation with a friend who shared some of her experiences with a chronic illness that on any given day leaves her in varying degrees of pain and which saps her of her strength and energy physically, socially, mentally and emotionally.
Later that day, I came across a new webcomic, created by a very talented former college roommate, illustrating some of her experiences being married to a man with an unidentified illness that similarly leaves him in great pain and deprives him of strength and energy.
In my clinical work as a therapist, I have worked with many clients who struggle with invisible diseases, the most common being depressive and anxiety disorders. I’ve also noticed that many who come in with depression also are affected by invisible disorders of pain, including chronic conditions such as arthritis, fibromyalgia or lupus. A chronic disease refers to an illness that is ongoing and incurable. Many chronic diseases are manageable, while some chronic diseases are less understood and more treatment resistant, as is often the case with certain pain disorders. The National Institute of Health, on a fact sheet on pain management noted the following:
- Chronic pain is the most common cause of long-term disability.
- Pain affects more Americans than diabetes, heart disease and cancer combined
- Pain can be a chronic disease, a barrier to cancer treatment, and can occur alongside other diseases and conditions (e.g. depression, post-traumatic stress disorder, traumatic brain injury).
One client who struggled with multiple chronic conditions, including pain disorders and depression, introduced me to the idea of “Spoon Theory”, which she considers a helpful way to make sense of and explain the limitations she encounters due to her specific health issues.
“Spoon Theory” originated from a blog post written by someone with a chronic illness who recounted a conversation with a friend at a restaurant. Her friend wanted to better understand what she was experiencing. In an attempt at explaining, this woman gathered up as many spoons as she could find and handed the bouquet of utensils to her curious friend. She explained that that cluster of spoons represented her available energy for the day, and that when the spoons were gone, that there would be insufficient physical, mental, emotional or social energy to function for the remainder of the day.
She then had her friend detail the events of her day. When she referenced getting showered, a spoon was taken. When she referenced putting on make-up, a spoon was taken. Doing her hair? A spoon was taken. Cooking breakfast? Another spoon. Doing the dishes? Another spoon. Drop the kids off at school? Another spoon. By the time the morning routine was completed, very few spoons remained. At that point the challenge and reality of decision-making became more evident. Do you answer the phone at the expense of another spoon, or try to save energy to help the kids with homework after school? Do you tidy the house, or take it easy in hopes that you will be able to make the family dinner? To overstretch one’s self on a given day means feeling the effects of it and having fewer “spoons” available the next day.
While this theory isn’t scientific, many identify with the idea of having a limited amount of energy that has to be rationed in order to maintain any sense of staying functional. This strategy is consistent with the scriptural counsel, “It is not requisite that a man should run faster than he has strength”. My former roommate represented the struggle her husband faces in the image above, showing that he may start out the day with only two figurative spoons.
In addition to the pain and difficulty inherent in such conditions, those who personally struggle with such illnesses know the challenge and pain of interacting with those who cannot see or understand their conditions. Because these illnesses are invisible, and because they do not go away, it is difficult for others to understand their struggle, to know how to act, or to make sense of these challenges that their family members, friends, church members or community members may be struggling with.
So, what should someone who wants to be supportive understand, and what can they do?
Understand and accept that the struggle is real
People struggle to accept and understand what they don’t see. It is easy to doubt that a condition is real, and it is easy to forget, especially if you only see people on their good days when they appear to be functioning normally. It is important to respect and trust your loved one enough to accept that their experience is real and valid. Don’t assume that they are faking or that it is “all in their head”, and don’t assume that it will go away or that it must have gone away by the time you see them again.
Understand that this is a problem that you can’t fix
Many people are natural fixers. They like problems that they can understand and provide solutions to. When there isn’t a solution, it becomes uncomfortable to be around a chronic sufferer, and some individuals stay away, while others may redouble their efforts to find a solution. They may end up offering proposed solutions that seem to imply that the sufferer is responsible for their continued pain, or they may make comments that come across as insensitive. By accepting that you can’t fix the problem, you can stand supportively with your loved one in their pain, rather than seemingly standing against them and their pain.
Seek to understand by listening empathetically, and acknowledge that you can’t fully understand
Depending on the person and the relationship, it may be appropriate to ask about their condition. In such circumstances, ask to understand, and listen in a way that helps them feel cared for. Approach with an attitude of caring and curiosity. Avoid saying “I totally understand” or “I know exactly what you’re going through”. Instead try to acknowledge, “I can’t imagine how difficult that must be, but I’m so glad you shared that with me” or “That sounds really hard; I’m sorry that you have to experience that”.
There is great power in feeling connected to others. When someone listens empathetically, the person being listened to feels supported, loved and knows that they are not alone.
Recognize that cancelled plans aren’t personal
Understand that limits on energy may make it unrealistic for some individuals to consistently make and keep social plans. The friend I spoke with yesterday shared that she has begun to experience some social anxiety that peaks later in the day. This has made it difficult for her to attend social events. She now limits most social interactions to one-on-one visits in the mornings. Be willing to assume that cancelled plans don’t reflect that a friend doesn’t value you, instead value the efforts that are made to set up and keep the plans that they do.
If a friend has communicated that they are limited in what they can do, respect those limits and boundaries. If someone had a broken arm, you wouldn’t ask them to haul 50 pound bags of concrete. Similarly, if someone has communicated to you that they have an illness or disorder that limits their social, emotional or physical capabilities, avoid asking or inviting them to do things that are outside their ability to reasonably function. And rely on them to know what level of functioning is reasonable for them. If they tell you there are things they cannot do, trust them.
There is a lot more that could be said about understanding or responding to loved ones with invisible illnesses. And perhaps in the future I will write more about depression or pain disorders in this context. Consider this post to be an overview with a lot of asterisks. I tried to keep recommendations general, because everyone experiences illness differently, and their needs, levels of functioning, and paths forward will be specific to them. But hopefully some of the information provided here will be helpful in inviting a little bit more understanding and a little bit more compassion.